A5068818815- Childhood Cancer Survivors' Quality of Life
- Infant Development and Preterm Care
- Family and Patient Care in Intensive Care Units
- Family and Disability Support Research
- Motivation and Self-Concept in Sports
- Congenital Heart Disease Studies
- Ethics and Legal Issues in Pediatric Healthcare
- Youth Development and Social Support
- Impact of Technology on Adolescents
- Sport Psychology and Performance
- Identity, Memory, and Therapy
- Musculoskeletal pain and rehabilitation
- Religion, Spirituality, and Psychology
- Grief, Bereavement, and Mental Health
- Pediatric Pain Management Techniques
- Social Media and Politics
- Family Support in Illness
- Child Development and Digital Technology
- Technostress in Professional Settings
- Child and Adolescent Health
- Adolescent and Pediatric Healthcare
- Cancer survivorship and care
- Mobile Crowdsensing and Crowdsourcing
- Youth Education and Societal Dynamics
- Open Source Software Innovations
Nemours Children's Health System
2015-2025
Children's Mercy Hospital
2023-2024
University of Kansas
2019-2024
Center for Children
2016-2024
Alfred I. duPont Hospital for Children
2018-2020
DuPont (United States)
2020
Loyola University Maryland
2012-2019
Concordia College - Minnesota
2016-2018
Johns Hopkins University
2012-2014
Johns Hopkins Medicine
2014
Digital stress is believed to play a role in the association between social media use and psychosocial outcomes. However, literature limited by lack of measures that conform published theoretical models construct. The present investigation details development new multidimensional measure digital stress. Based on an earlier conceptualization Stress (Steele et al., 2020), Study 1 identified items from extant stress, conducted qualitative review compose items, focus groups with young adults...
Abstract Objective: To examine relationships amongst parental post-traumatic stress symptoms, growth, overprotective parenting, and child emotional/behavioural problems in families of children with critical CHD. Method: Sixty parents (15 fathers) aged 1–6 completed online questionnaires assessing symptoms problems. Bivariate correlations mediational analyses were conducted to evaluate parenting as a mediator the association between Results: Parents reported significant over 18% meeting...
An important component to effective fibromyalgia treatment is patient education about the condition. While previous educational interventions have been developed, these not incorporated lived experiences of patients and may address common misunderstandings among those who benefit from interventions. This study aimed explore understanding, confusion, gaps in knowledge report a diagnosis. Participants were recruited via clinic flyers social media page chronic pain research laboratory....
Children and their family members may experience potentially traumatic events during medical treatment that can result in pediatric stress reactions. Play is a normative part of childhood facilitate engagement care be incorporated trauma-informed care. This qualitative study used semistructured interviews to examine the role play its potential use The perspectives 30 multidisciplinary healthcare providers representing 5 divisions (Cardiology, Endocrinology, Oncology, Orthopedics,...
OBJECTIVE Nondeath losses and experiences of grief can impact mental health but are understudied among parents children with complex medical conditions. This study leverages online crowdsourcing, an approach that gathers diverse ideas by soliciting contributions from community, to characterize experienced congenital heart disease (CHD). METHODS Eighty CHD a prior history cardiac surgery hospitalization across 44 US hospitals responded open-ended questions on private social networking site as...
Purpose This article describes the stakeholder-driven design, development, and testing of web-based, multimedia decision aids for youth with type 1 diabetes who are considering insulin pump or continuous glucose monitoring their parents. is initial phase work designed to develop evaluate efficacy these in promoting improved decision-making engagement use a selected device. Methods Qualitative interviews 36 parents adolescents had previously faced decisions 12 health care providers defined...
To examine sources of stress for fathers children with congenital heart disease and opportunities intervention to prevent or reduce paternal mental health problems.Qualitative study using online crowdsourcing, an innovative research methodology create community serve as a sample.Yammer, social networking site.Geographically diverse sample 70 parents (25 45 mothers) young disease.Participants joined private group on Yammer responded 37 open-ended questions over 6-month period. Qualitative...
Shy emerging adults report greater internalizing behaviors and lower quality close relationships, but fewer externalizing (Nelson et al., 2008). Although multiple forms of children's adolescents' social withdrawal have been identified, such as fearfulness disinterest (withdrawal, no fear; e.g., Coplan & Rubin, 2010), less work has done to examine adults' withdrawal. Therefore, we conducted an online study (N = 813) at five American colleges universities (57% women; 73% European American),...
Abstract Objective To describe a novel, five-phase approach to collecting qualitative data from hard-to-reach populations using crowdsourcing methods. Methods Drawing experiences across recent studies with type 1 diabetes and congenital heart disease stakeholders, we five phases of methodology, an innovative conducting research within online environment, discuss relevant practical ethical issues. Results Phases methodology are: (I) Preparing; (II) Forming Crowds; (III) Collecting...
Extensive research demonstrates that pediatric medical events can be traumatic for patients, caregivers, and siblings, but the aftereffects of these potentially family its members are not well documented. Through focus groups with this qualitative study examined perceived consequences individual as a whole. Sixteen (6 caregiver, 5 patient, sibling) were conducted. Participants included 44 24 14 siblings from 28 families children treated in cardiology, endocrinology, oncology, orthopedics, or...
To characterise the parenting priorities of mothers and fathers infants hospitalised with CHD generate recommendations to support during infant hospitalisation.Through online crowdsourcing, an innovative research methodology create community serve as a sample, 79 parents young children responded questions about hospitalisation via private social networking site. Responses were analysed using qualitative methods.Three broad themes identified: (1) establishing bond my baby, (2) asserting...
OBJECTIVES: To develop a model of family-based psychosocial care for congenital heart disease (CHD). DESIGN: Qualitative study using crowdsourced data collected from parents young children with CHD who received across 42 hospitals. SETTING: Yammer, social networking platform used to facilitate online crowdsourcing and qualitative collection. SUBJECTS: Geographically diverse sample 100 (72 mothers 28 fathers) CHD. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Parents joined private...
Objective This article characterizes the educational needs of parents following fetal or neonatal congenital heart disease (CHD) diagnosis and generates recommendations for meeting these needs. Study Design Online crowdsourcing methods were used to collect qualitative data from 95 children with CHD regarding their education preparation diagnosis. Data analyzed using themes organized around substructure met unmet Results Two represented consistently needs, whereas 10 that either...
Youth sport leaders must not ignore the influence parents have on creating a positive developmental experience for young athletes. Therefore, expectations involving parental involvement and conduct be addressed prior to athletes' participation. This article aims examine importance of mandatory training programs youth sports. It explores research regarding what should learn, how implement programs, hold accountable. Requiring could an important step toward changing often negative sideline...
This study aimed to identify barriers and facilitators discussing parent mental health within child care for parents of children with congenital heart disease (CHD). Seventy-nine young CHD who received across 40 hospitals in the United States responded questions about their child's providers. Responses were analyzed using qualitative research methods. Parents described multiple barriers: (1) belief that support was outside team's scope practice, (2) perceived expectation "stay strong," (3)...
Shy emerging adults report greater internalizing behaviors and lower quality close relationships, but fewer externalizing (Nelson et al., 2008). Although multiple forms of children's adolescents' social withdrawal have been identified, such as fearfulness disinterest (withdrawal, no fear; e.g., Coplan & Rubin, 2010), less work has done to examine adults' withdrawal. Therefore, we conducted an online study (N = 813) at five American colleges universities (57% women; 73% European American),...